Lily Strang, a 6-year-old first-grade student at Congress Elementary School in Sturgis, weighs only 30 pounds, but makes up for it in energy, creativity and courage.Lily has a rare genetic disease called fanconi anemia. It’s so rare, only 10 or 12 babies are born with FA each year.

Rosalie Currier

Lily Strang, a 6-year-old first-grade student at Congress Elementary School in Sturgis, weighs only 30 pounds, but makes up for it in energy, creativity and courage.Lily has a rare genetic disease called fanconi anemia. It’s so rare, only 10 or 12 babies are born with FA each year. Fanconi anemia is a slowly progressing disease that causes bone marrow failure. It is so rare that research has been limited and no known treatment exists, according to Lily’s mother, Erin Furr.Beyond being smaller than most of her peers, the most obvious aspect of the disease is that Lily has no thumbs.That doesn’t bother Lily much, but this year students started to ask questions and some classmates teased her because she is different.Erin brought the situation to the attention of Congress Principal Teresa Belote, who became an instant advocate. Belote and Lily sat down for a snack and came up with a plan. Belote believes education is a key to encouraging children to be kind and understanding, so she created a book to describe Lily’s condition. Erin supplied the photos and Lily approved all pictures that were used.At an all-school assembly Friday, Belote will present Lily’s book, projected on the gym wall to help teach students about FA and celebrate each person’s individuality. As the last page says, “Wouldn’t it be boring if we were all the same?”“I am so touched by this and feel Mrs. Belote deserves recognition for her wonderful approach to the problem,” Erin said.Lily hasn’t decided yet.“I don’t know what I think about the assembly,” Lily said.She claims not to be nervous, scared or excited, but she has never been the star of an all-school assembly. However, she does like the book.Seeing a page on Belote’s computer screen, Lily said, “That next picture, Mrs. Belote, I know you’re going to freak out.”It was a photo of Lily climbing over the top of monkey bars. If Belote is near, she always warns “be careful” as Lily fearlessly climbs and plays, but her mom is used to Lily’s adventurous spirit.“She is very outgoing and spunkie,” Erin said. “Lily is a princess who likes dinosaurs, allegators and roly-poly bugs — a tomboy princess,” Erin said.Lily has never met anyone with fanconi anemia, but this summer Erin is planning to take her to an FA camp in Maine.Erin hopes the assembly reaches beyond helping students understand FA, she also hopes it will raise awareness of the condition among community members. To support FA research, several fundraising efforts are set for this spring.Tina Dodson of White Pigeon is making origami cranes that will sell for $1, called “1,000 Cranes for Lily,” and likely will be ready in April.On May 2, there will be a “Dining to Donate” opportunity at Applebee’s in Sturgis, followed by a baked goods sale on May 10, also at Applebee’s.